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Psycho-oncology co-operative research group Research highlights 2008/09 PoCoG is one of Australia’s national cooperative cancer clinical trials groups, working to increase collaboration and innovation in psychooncology research. We aim to improve outcomes for people affected by cancer by developing and facilitating high quality, collaborative and clinically relevant research focussed on optimising psychosocial and supportive care. Membership PoCoG has more than 460 members from a range of research and health disciplines across Australia and internationally. 2008: 334 2009: 461 First Australian Chair in Cancer Quality of Life p3 New Psycho-oncology Outcomes Database (PoD) p4 PoCoG workshops foster new research p4 Researchers/academics Research coordinators and research staff Current research priorities p6 Program/policy management Other Clinical/health services management Nursing professionals Medical Psychosocial clinicians SAC approved research projects 2008: 7 2009: 20 Number of participants recruited to studies 2008: 302 2009: 1022 In 2009 PoCoG became an official centre of The University of Sydney. The University has been PoCoG’s home since its inception in 2005, and we are delighted with this formal recognition. Our operations and activities will be unchanged, but there will be some changes to our governance and branding from early 2010. 2 PoCoG Research Highlights 2008-2009 Overview from our Chair This report highlights the recent achievements of PoCoG, the Psycho-oncology Cooperative Research Group (PoCoG). Over the past four years, we’ve worked hard to establish the Group to foster high-quality, collaborative and clinically relevant research aimed at improving psychosocial and supportive care for people affected by cancer. During this time, our membership has rapidly grown; so too has the range of programs and resources to foster and support psychosocial and quality of life research. PoCoG’s core activities and most significant achievements to date include: creating formal links with the other national cooperative cancer clinical trials groups (CTGs) to develop psycho-oncology sub-studies and collaborative research establishing national priorities for psycho-oncology research the appointment of the first Cancer Australia Chair in Cancer Quality of Life, Professor Madeleine King convening workshops to facilitate development of new research concepts and studies developing and conducting studies focussed on identified needs in psychosocial and quality of life research developing programs and resources to engage and support early career researchers in psycho-oncology the launch of the Psycho-oncology Outcomes Database (PoD), to assist researchers in finding appropriate measures of quality of life. Our Chair: a world leader in psychooncology research Professor Phyllis Butow BA (Hons), PoCoG’s successes are underpinned by our commitment to collaboration and multidisciplinary approach. Our directions and activities are guided by advisory committees comprising researchers, health professionals and consumer representatives with various interests and experiences. On behalf of PoCoG I thank all the committee members and staff (acknowledged on the back page of this report) for their contribution to our early achievements. Dip Ed, MClinPsych, MPH, PhD has been Chair of PoCoG since its establishment in 2005. Phyllis is a Professor in the School of Psychology, Co-Director, Centre for Medical Psychology and Evidence- We look forward to reporting further achievements in our efforts to help improve cancer outcomes through psycho-oncology research next year. based Decision Making, the University of Sydney and NHMRC Principal Research Fellow at the University of Sydney, and Co-Director of the Sur- Professor Phyllis Butow Chair gical Outcomes Research Centre. Phyllis has worked for over 20 years in the area of psycho-oncology and has developed an international reputation in psycho-oncology research and in health communication. She is a world leader in research focussed on doctor-patient communication in oncology, and has particular expertise in longitudinal epidemiological studies exploring the impact of psychosocial factors in disease incidence and outcome. In 2009 Phyllis received an International Psycho-Oncology Society award for her outstanding contribu- Acknowledgements PoCoG is jointly funded by Cancer Australia and Cancer Institute NSW. Executive Committee PoCoG’s Executive Committee oversees our strategic direction and financial and administrative management. Our Scientific Advisory Group monitors the scientific direction and priorities of PoCoG. The Quality of Life Advisory Committee provides advice on strategic directions for our Quality of Life Office. Dr Melanie Price We wish to thank the committees and funding bodies for their support. Prof. Phyllis Butow (Chair) Prof. Madeleine King Dr Janette Vardy, PoCoG SAC Chair Dr Jane Turner, OZPOS Chair Dr Jeremy Couper Mr Graham Glendenning Ms Sally Hodgkinson Prof. Brian Kelly Dr Nicole Rankin Prof. Kate White Scientific Advisory Committee tion to the field of psycho-oncology Dr Janette Vardy (Chair) (see p 6). A/Prof. Elizabeth Eakin (Deputy Chair) 3 Focus on quality of life PoCoG strives to improve the quality of life of people affected by cancer through research, education and collaboration. Our Quality of Life Office was established to foster and enhance research focussed on the health-related quality of life of people affected by cancer. It provides advice and support to researchers and cancer clinical trials groups about quality of life (QoL) issues, particularly the measurement, analysis and interpretation of health-related QoL. The QoL Office team has been developing strong networks and collaborations with other cancer clinical trials groups (CTGs), both nationally and globally, helping them develop QoL research protocols and sub-studies. We have provided advice and support to many investigators and statisticians, and developed many online resources to support researchers in assessing the health-related quality of life of people affected by cancer. We have initiated several ongoing research studies and are collaborating in others with ANZ CTGs and other QoL researchers internationally. These are aimed at: developing a cancer-specific health state classification system for use in economic analysis of cancer services and therapies improving quality of life measurement for melanoma patients calibration of the European Organisation for the Research and Treatment of Cancer (EORTC) fatigue item pool for computer adaptive testing field testing a quality of life questionnaire for men with testicular cancer. The QoL Office also completed a review of patient-reported outcomes for healthrelated QoL, anxiety, depression and distress, with recommendations for choice of measures, commissioned by the Cancer Institute NSW. Thanks to our Advisory Group members and staff team who have enthusiastically driven the establishment of PoCoG’s QoL Office and will ensure we continue to meet the needs of researchers and health professionals in the future. First Cancer Australia Chair in Cancer Quality of Life The past year has been an exciting and highly productive time for our Quality of Life Office, following the appointment of Professor Madeleine King, the first Cancer Australia Chair in Cancer Quality of Life. Madeleine brings a wealth of experience and knowledge to the Professor Madeleine King Cancer Australia Chair in Cancer Quality of Life Director, PoCoG Quality of Life Office PoCoG team and is instrumental in building collaborative research efforts in quality of life research in the Australian cancer community. Madeleine holds a Bachelor of Science (Hons) from The University of Sydney and a PhD in Medical Prof. Phyllis Butow, PoCoG Chair A/Prof. Martin Stockler Prof. Madeleine King A/Prof. Rosalie Viney Dr Melanie Price Prof. Patsy Yates Mr Graham Glendenning Statistics from The University of Newcastle. Her experience covers a range of health research disciplines, Ms Kim Hobbs Funding Bodies but her key research interest is Ms Sally Hodgkinson Cancer Australia the measurement, analysis and Dr Monika Janda Cancer Institute NSW A/Prof. Michael Jefford Clinical Oncological Society of Australia A/Prof. Bettina Meiser beyondblue A/Prof. Martin Stockler National Health and Medical Research Council Prof. Patsy Yates auDA Foundation QoL Advisory Group Prof. Alan Coates interpretation of health-related quality of life and other patient reported-outcomes. Madeleine is a former President of Cure Cancer Australia the International Society for Quality National Breast Cancer Foundation of Life Research and continues to sit Prof. Robert Sanson-Fisher on the Society’s Advisory Council of A/Prof. Eva Segelov Past Presidents. 4 PoCoG Research Highlights 2008-2009 PoCoG resources support research PoCoG has developed a large array of resources and information to support researchers and health professionals in developing and doing psycho-oncology research and forming new research collaborations and networks. Our new Psycho-oncology Outcomes Database (PoD) is a searchable online database of validated psychosocial and quality of life measures. PoD contains information about more than 300 patient-reported questionnaires measuring outcomes such as quality of life, supportive care needs, psychological states and social support. It will support and enhance psycho-oncology research in Australia by enabling researchers to find the most appropriate patient-reported measures for their studies. PoCoG has created a world map of psycho-oncology research centres to help foster new collaborations and networks among psycho-oncology researchers. The interactive map, on the PoCoG website, assists researchers to identify centres and individuals with expertise in particular areas and identify collaborating centres for studies or for PhD or postdoctoral studies or work experience. Other web-based resources freely available to all PoCoG members include: PoCoG members’ index – to facilitate communications and networking between members Members’ forum where members can discuss issues and ask questions via email online seminars – recording and slides of lectures by international leaders in psycho-oncology our quarterly e-newsletter – providing updates on PoCoG activities and relevant news from members and other organisations calendar of events answers to frequently asked questions about quality of life research and links to tools and information practical advice about involving consumers in research links to useful websites. Fostering new research PoCoG brings together researchers, clinicians, health care professionals and consumers to share ideas and form new collaborations and networks to conduct psycho-oncology research. We foster and support the development of large-scale, multicentre psychooncology studies that would be difficult for any one team to mount. PoCoG’s Scientific Advisory Committee and other psycho-oncology experts. In 2010 the groups will conduct pilot studies and gather data to demonstrate the clinical relevance of their research projects and planned interventions and finalise protocols, with the aim of submitting applications for NHMRC funding in 2011. PoCoG has convened several Concept Development Workshops to identify needs in psycho-oncology and develop research ideas, protocols and intervention studies to address those needs. Screening for distress A one-day workshop of psychosocial clinicians was held in November 2008, to identify research concepts that could be developed as multicentre studies of psychosocial interventions for cancer patients and carers. Four research topics were considered feasible to pursue: Fear of recurrence in cancer survivorship Sleep disturbance Supporting patients with a poor prognosis Head and neck cancers – an intervention to improve psychosocial outcomes. Writing groups were formed to develop the research concepts, with PoCoG support and assistance. At our most recent Concept Development Workshop in September 2009, the four writing groups developed their protocols with the assistance of www.pocog.org.au The proportion of cancer patients experiencing undiagnosed distress is high. There is evidence that routine screening for distress and symptoms can improve the quality of life of people with cancer and their carers. At our most recent Concept Development Workshop in September 2009, PoCoG’s Scientific Advisory Committee members and other invited experts discussed the possibility of a nationwide implementation of routine screening for psychological distress in patients and carers. Pilot study grants In 2009 funding from the COSA and Cooperative Groups Enabling Grant enabled us to initiate PoCoG Pilot Study Grants to support the development of intervention studies in psycho-oncology. We received 16 applications from members currently involved in psycho-oncology research who plan to develop a psychosocial intervention trial for submission to the National Health and Medical Research Council for funding in 2010 or 2011. 5 Linking and supporting researchers and health professionals One of PoCoG’s aims is to bring together researchers, clinicians, health care professionals and consumers with an interest in psycho-oncology to foster collaboration and the exchange of ideas. Our success in linking and supporting people interested in psychooncology is evinced by our growing membership, now totalling more than 460 across Australia, New Zealand and internationally. Our members include psychologists, psychiatrists, behavioural scientists, social workers, nurses, medical oncologists, radiation oncologists, surgeons and cancer policy and project officers. We have developed a range of programs and services to link and support our members, to build their research capacity, and to facilitate new collaborations and networks to progress psycho-oncology research. In November 2009 PoCoG and the Psycho-oncology Group of COSA (OZPOS) jointly convened the first Professional Day for psycho-oncology professionals. It was an opportunity for members to present research, discuss educational and workforce needs and explore clinical and service delivery issues within a dedicated psychooncology forum. The PoCoG website has become an effective tool for communication with and between research and health professionals in psycho-oncology, both within Australia and across the world. Our web-based Members’ Forum, launched in October 2008, enables PoCoG members to exchange ideas, email a question to all other participating members, and identify other members with shared interests to develop research collaborations, networks or mentoring relationships. Other resources available to PoCoG members are listed in the ‘PoCoG resources’ item on page 4. Participants of the PoCoG Concept Development workshop in November 2008 Support for early career researchers PoCoG supports early career psycho-oncology researchers by providing access to resources (see above) and events such as our Concept Development Workshops to enable and support their participation in collaborative research. PoCoG also has developed specific mentoring programs: ALTG/PoCoG Clinical Research Fellow We have established a Research Fellowship, in collaboration with the Australasian Lung Trials Group, to foster psychosocial and supportive care research in the area of lung cancer. Ms Erena Wikaire joined the PoCoG team in this position in April 2009. Cancer Institute NSW Clinical Fellow PoCoG mentored clinical psychologist Maree Thomas, who investigated the effectiveness of a mindfulness-based group intervention in reducing distress in radiation therapy patients at St George Hospital’s Cancer Care Centre. PhD student mentoring In 2009 clinical psychologist Ming Sze and psychology graduate Ben Smith commenced their studies in psychooncology under the supervision of PoCoG investigators. Travel Reimbursement Scheme Our Travel Reimbursement Scheme, funded by Cancer Australia, supports the ongoing professional development of cancer researchers and health professionals in the discipline of psycho-oncology by assisting PoCoG members to attend national or international conferences, workshops, seminars or other professional development activities. Erena Wikaire and study participant Mrs Lydia Shandar during a physical activity training session 6 PoCoG Research Highlights 2008-2009 Psycho-oncology research priorities PoCoG has established national priorities for psycho-oncology research. In 2007-2008 we conducted a two phase project with healthcare and research professionals working in the area of psycho-oncology across Australia to identify psycho-oncology research priorities and needs. The top three research priorities identified were: survivorship distress identification, referral and management issues for carers. We hope the survey results will direct limited resources towards largescale translational research efforts on priority areas in current clinical practice. Current research PoCoG has developed and implemented several studies focussed on identified areas of need in psychooncology research. Exploring the needs of cancer patients from CALD backgrounds Cancer patients from culturally and linguistically diverse (CALD) communities traditionally have been excluded or under-represented in clinical trials because of language barriers. To address this issue, PoCoG is coordinating four novel studies. The ‘Unmet needs study’ is examining unmet needs, quality of life, psychological distress and patterns of care in cancer survivors from Arabic, Greek and Chinese (Cantonese and Mandarin) communities. The ‘CALD Clinical study’ is examining these issues in CALD patients newly diagnosed with cancer and undergoing active treatment. The ‘Interpreters study’ grew from recognition, during the first phase of the Unmet needs study, of the important role of interpreters in oncology consultations with people of CALD backgrounds. This qualitative study of professional interpreters working in the NSW and Victorian healthcare systems explored their experiences and challenges in oncology consultations. PhD student Ms Ming Sze representing PoCoG at the Chinese Cultural Day in Ashfield, NSW, May 2009 Awards and honours The ‘Prognosis study’ investigated barriers to effective cross-cultural communication about prognosis in people with metastatic cancer from CALD communities. To ensure the cultural appropriateness of these studies we formed a Community Partners Advisory Board for each CALD community, comprising health professionals, religious leaders, psychologists, social workers and consumer representatives. Data analysis is in progress. Collaborative projects PoCoG has developed quality of life studies in partnership with other national cooperative cancer clinical trials groups and researchers. As part of a collaboration with the Australian and New Zealand Gynaecological Oncology Group and the Gynaecologic Cancer Inter-Group, PoCoG is designing the healthrelated quality of life component of a study to determine whether palliative chemotherapy improves symptoms for women with recurrent ovarian cancer. This study will determine how to measure benefit in this context, and develop a prognostic index to predict which women will benefit from palliative chemotherapy. In collaboration with the Australian and New Zealand Urogenital and Prostate Cancer Trials Group (ANZUP) PoCoG is coordinating a study of the psychosocial impact of surviving testicular cancer. Our aim is to determine the prevalence and correlates of depression, anxiety and psychosocial distress among Australian survivors of testicular cancer. This information will lead to better design, focus and timing of multidisciplinary interventions to improve long-term psychosocial outcomes. In 2009 PoCoG Chair Professor Phyllis Butow was co-recipient of the prestigious International PsychoOncology Society (IPOS) Bernard Fox Memorial Award for outstanding contribution to education, research or leadership in the field of psycho-oncology. PoCoG Executive Committee member Professor Kate White was appointed the first Academic Chair in Cancer Nursing for NSW in May 2009. Professor White’s appointment recognises the vital role of specialist nurses in cancer treatment. Participants of the PoCoG Protocol Development Workshop 2007 at the Vibe Hotel, Rushcutters Bay, Sydney 7 PoCoG GRANTS Butow, P. (2005-2009). NSW PoCoG Research Infrastructure Grant: $401,682, CI NSW. Butow, P., et al. (2009). Literature Review on Psychosocial Outcome Measures: $29,756.25, CI NSW. King M, et al. (2009-2010). PANZALTTO: Patient preferences substudy (ANZ): $16,500, ANZBCTG. Butow, P. (2006-2007). PoCoG Research Infrastructure Grant: $540,000, Cancer Australia. Eisenbruch, M., & Butow, P. (2008). Understanding Barriers to Effective Cross-Cultural Communication about Prognosis of Metastic Breast and other Cancers: $75,000, Cure Cancer Australia Foundation. Olver, I., et al. (2009-2010). Psychosocial sequelae of surviving testicular cancer: $190 800, Cancer Australia and beyondblue. Butow, P. (2008-2010). PoCoG Research Infrastructure Grant: $1,162,365, Cancer Australia. Butow, P. et al. (2009-2011). PoCoG Research Infrastructure Grant: $330,000, CI NSW. Butow, P., et al. (2009-2011). Unmet needs of CALD cancer patients: $600,000, Cancer Australia and beyondblue. Butow, P., et al. (2007-2008). Unmet needs of CALD cancer patients: $198,378, NHMRC. Butow, P., et al. (2008-2009). PoCoGEquipping the research community to assess quality of life in cancer: $19,790, auDA. Eisenbruch, M., et al. (2006-2007). Barriers to Effective Cross-Cultural Communication about Prognosis of Metastic Breast and other Cancers: $210,000, NBCF. Friedlander M, et al. (2009-2011). Does Palliative Chemotherapy Improve Symptoms in Women with Recurrent Ovarian Cancer?: $502,250, NHMRC. King, M. et al. (2009). Development of cancer-specific multi-attribute health states from the QLQ-C30 for use in economic evaluation: $47,814, CI NSW. PoCoG (2007-2011). The Cancer Australia Chair in Cancer Quality of Life: $634,496.50, Cancer Australia. PoCoG (2007-2008). COSA Enabling Grant: $36,000, COSA. PoCoG. (2009-2010). COSA Enabling Grant: $36,000, COSA. Butow, P., et al. (2009-2010). Population based survey exploring anxiety, depression and unmet needs of CALD cancer patients: $25,000. beyondblue Wikaire, E., et al. (2009-2010). Caring for thoracic cancer caregivers: $4,780. ALTG. Publications and presentations Conference oral presentations and posters Butow, P., et al (2008). Conducting research with culturally and linguistically diverse cancer patients: Methodological issues, COSA ASM. Sydney. Butow, P. (2008). Cultural issues in information exchange between health professionals and patients, COSA ASM. Sydney. Butow, P., et al. (2008). Unmet needs in Chinese, Greek and Arabic Speaking Cancer Patients in Australia. IPOS 10th World Congress of Psycho-Oncology. Madrid, Spain. Butow, P, et al. (2008). Chinese, Greek and Arabic speaking cancer patients in Australia: Unmet needs and healthcare challenges, Sydney Cancer Conference. The University of Sydney. Butow, P., et al. (2008). Barriers to research with cancer patients from culturally and linguistically diverse (CALD) communities in Australia. IPOS 10th World Congress of PsychoOncology. Madrid, Spain. Dzidowska, M., et al. (2008). Views of Oncology Health Professionals on Priority Psycho-Oncology Research Questions, Sydney Cancer Conference. The University of Sydney and COSA ASM, Sydney. Luckett, T., et al. (2008). Psychooncology Co-operative Research Group (PoCoG): A new ‘Quality of Life Office’ to support Australian cancer clinical research. 13th National Health Outcomes Conference. Canberra. Winstanley, J., et al. (2009). Improving the measurement of quality of life (QOL) in an Australian melanoma population. 7th World Congress on Melanoma. Vienna, Austria. Sze, M., et al. (2008). Barriers to accessing psychosocial care amongst CALD cancer patients, Sydney Cancer Conference. The University of Sydney. Journal Publications Sze, M., et al. (2008). Help and hindrance to effective doctor-patient communication, COSA ASM. Sydney. Aldridge, L., et al. (2009). Unmet needs in Chinese, Greek, Arabic and Englishspeaking cancer patients in New South Wales, IPOS 11th World Congress of Psycho-Oncology. Vienna, Austria. Butow, P., et al. (2009). Oncology consultations with patients from culturally and linguistically diverse (CALD) backgrounds: The interpreter perspective. IPOS 11th World Congress of Psycho-Oncology. Vienna, Austria. Schofield, P., et al. (2009). Oncology consultations with patients from culturally and linguistically diverse (CALD) backgrounds: The interpreter perspective, MASCC/ISO 2009 International Symposium Supportive Care in Cancer. Rome, Italy. Luckett, T., et al. (2008). Psychosocial issues in long term survivors of testicular cancer: Directions for future research. Asia-Pacific Journal of Clinical Oncology, 125-131. Ewing, J., et al. (2009). Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder. Quality of Life Research, 1-14. Smith, DP., et al. (Asccepted 30/9/09). Quality of life three years after treatment for localised prostate cancer: A population-based study. British Medical Journal. Butow P, et al. (Accepted 15/9/09). A review of adherence-related issues in adolescents and young adults with cancer. Journal of Clinical Oncology. Psycho-oncology Outcomes Database Do you need a psychosocial or quality of life measure for your next study? PoCoG’s new Psycho-oncology Outcomes Database (PoD) is a searchable online database of validated psychosocial and quality of life measures. PoD contains information about more than 300 patient-reported questionnaires measuring outcomes such as quality of life, supportive care needs, psychological states and social support. PoD is searchable by questionnaire type, patient characteristics, tumour group, treatment type and other domains to help you find the most appropriate measure for your study. Access to PoD is free via the PoCoG members’ website: www.pocog.org.au/pod Dr Melanie Price Executive director Ms Monika Dzidowska Executive officer Dr Tim Luckett Project manager Ms Rebecca Mercieca Project assistant Ms Sharon Ceiley Administrative assistant Contact Us PoCoG Mailing Address and Office Location: School of Psychology A18 Brennan MacCallum Building The University of Sydney NSW 2006 Australia General Enquiries Phone: +61 2 9036 5002 Fax: +61 2 9036 5292 E-mail: [email protected] www.pocog.org.au Publication number: EO-AR-091101 Executive office staff members: